What’s Next for “Chronic” Cancer Patients?

December 8, 2014
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ASH-logo_150x143This is a pivotal time for many, many people living with blood-related cancers like chronic leukemias, multiple myeloma, lymphomas and myeloproliferative neoplasms (MPNs).

ASH-logo_150x143This is a pivotal time for many, many people living with blood-related cancers like chronic leukemias, multiple myeloma, lymphomas and myeloproliferative neoplasms (MPNs). We have been calling most of these “chronic cancers” lately, because new medicines have been coming out this year with many more in late stages of research. The hope is there is—or will be—a medicine, or combination of medicines, for you and me (I have two of these conditions) that will allow us to live longer with few side effects. If we are lucky there may be a progression of ever better medicines to enable more of us might re-write the medical textbooks by living long lives. That’s what has happened in chronic myelogenous leukemia (CML).

The next installment of blood cancer news comes this week at the annual meeting of the American Society of Hematology (ASH) as 30,000 or so physicians and researchers from around the world gather this year in San Francisco. As I have for about the past 10 years, I will attend this meeting to bring the news directly to patients. I have a keen personal interest as a patient and as a journalist covering it for you and your family. With just a few other “patient advocates,” we have pioneered making this not just a meeting for doctors but for patients, too. This year our Patient Power team will “fast-track” a number of the 40 to 50 video interviews we expect to produce to post them online within days. And we even have a plan to stream a couple of video interviews with experts live, so you can ask questions—no time lag before you hear the latest. And why not? Isn’t about time the “black box” of medical science be peeled open further for the people most affected—the patients?

This year, I am excited we’ll be hearing more about “immuno-oncology” with promising late-stage medicines that can reactivate our immune systems to kill the cancer cells they missed earlier. This could be a very big deal for many cancer types. Other expected news includes new targeted, monoclonal antibodies for myeloma and drugs that reduce scarring in the bone marrow for myelofibrosis. And there are more breakthroughs with pills for CLL and lymphoma.

There are obstacles, of course, to getting the word out to you as broadly as we would like and for the news to have impact for you in conversation with your doctor. The medical profession and the healthcare industry is slow to change. There are competing self-interests, and they don’t ways align with what’s best for you and me, wanting to be healthier and live better right now. For years, we have been at the mercy of the slow pace of news dissemination—especially for rare conditions. Support for educational activities has been much less than the millions spent on marketing.  Besides that, as patients at various times we have been told we don’t understand the science or even need to or that it’s too complicated for us. Sometimes we are told we are for what’s new and are doing well enough. And when it comes to communications channels, there are groups that try to suggest that the only channel to follow is theirs. If they don’t report it, it is not significant or not credible. We, at Patient Power, of course, don’t believe that. We’ll do our best but we want you to always seek multiple sources to get perspective for what’s right for you and to ask questions. Thankfully, the ASH meeting is great for that.  More and more of us representing patients and determined for you to be in the most knowledgeable position to take control of your healthcare. This is another step in what our friend e-patient Dave says is the e-patient “revolution.” So stay tuned! Be signed up for alerts on our website and let us know what you want to know. And, as you learn what’s new, query doctors you trust to see how it applies to your situation.

“Talk” to you soon from ASH and, as always, wishing you and your family the best of health!

Andrew